Events intensify when separate centres multiply in the second stage, and "word of mouth" spreads the information wider. 1994, a hospice opened and was the only one for many years. By 2000, at the Initiative of Vera Millionchikova, there were already eight hospices in Moscow. However, these were eight buildings, which meant something other than implementing the philosophy of palliative care in each.
Benefactors always helped the First Moscow Hospice, but no official structure, Foundation, or union existed. Charitable help was provided anonymously and was not deliberately advertised. The "Vera" Foundation only appeared in 2006, named in honour of Vera Vasilyevna Millionchikova. From the outset, the Foundation was created exclusively to support the First Moscow Hospice. I want to address all our listeners: foundations must be created! Learn from the experience of other countries and develop foundations when organizing. It is optional to have a single charity foundation that will help everyone. A foundation in an organization will expand your opportunities and bring more freedom of action.
In 2007, we already started helping other hospices in Moscow; we wanted at least one city for all hospices to be standardized in terms of service provision.
In 2008, when Russia was still a relatively free country, and legislation was improving, a law on endowment appeared, and we created an endowment - a target capital. Our fund's endowment remains the only one in the healthcare field in Russia; there are also target capitals in culture and education. Also, for the first time, we started an informational and educational campaign on a national scale to talk about what a hospice is. One of the British hospices had a slogan: "We can't add days to life, but we can add life to days". This British slogan inspired us to read the text "If a person cannot be cured, it does not mean that he cannot be helped" - "if one can not be cured, one still can be helped". This has primarily changed the consciousness of both patients and the medical community. I think the most important thing is the word. In the beginning was the word; if you find the right words, the situation changes. Depending on the words you see, it will change in one direction or another.
In 2009, the "Vera" Foundation began to help hospices in other regions. In 2010, unfortunately, my mother, Vera Vasilyevna Millionchikova, passed away, and, as often happens, this gives a powerful fundraising push. In 2011, we held the first international conference, attended by Robert Twycross - one of the founders of palliative care in the world and one of the founders of PACED. At this conference, he gave a fantastic speech addressed to the Ministry of Health. You know that Robert is a very emotional person, tall, long-legged, grey-haired - very imposing. He said: who says that morphine kills? The absence of morphine kills. This statement made the effect of a bomb going off: how is it that - the lack of morphine kills? In the same year, in Russia, a law on protecting citizens' health appeared, outlining the concept of palliative medical care. It is formulated without the involvement of palliative care specialists and is categorically incorrect - it contradicts palliative philosophy and the definition of WHO. The law states that palliative care is a set of medical interventions contributing to the wrong understanding and interpretation of specialized medicine and palliative care. Parallel to these events, non-profit organizations enthusiasts in 2012 launched a project to create a children's hospice, and a large team of specialists goes to study in Poland and the UK. The following year, a building is allocated for a children's hospice, and an adult hospice begins to accept children officially and continues to do this for many years - until the doors of the children's hospice open. The "Vera" Charitable Foundation, understanding that in Moscow, children's palliative care is available both in the hospital and at home, and in other regions of Russia, it does not exist, begins a program to help families at home. The Russian situation in 2014 is very similar to what is happening now in Armenia, Georgia, Kazakhstan, and Kyrgyzstan.
In 2015, with the participation of Robert Twycross - a remarkable enthusiast and individual - we convinced the Ministry of Health of the need to create an Association of Professional Participants in Hospice Care. Interestingly, a similar one was created earlier in Kazakhstan.
The "Vera" Foundation launched a project called "Hotline", and an online resource called "About Palliative" appeared. I would like for the PACED Foundation to have a similar resource. It is the best resource on the topic of palliative care on the internet.
In 2016, we in Moscow made a logical and clear decision. For palliative care to no longer depend on each specific person at the head of a particular hospice, in order not to have movement in different directions depending on the peculiarities of understanding palliative care by each specific hospice director, to start working on uniform standards that the world and Europe have long been living by, we have combined all Moscow hospices into a single centre.
When there is one head and one director, everything is easier: to control, to achieve a uniform format in drug procurement, in the level of analgesia, in the training of nurses. I became the director of such a structure, but at the same time, I already understood and voiced it, and it showed in the strategy. After the standardization, all hospices must disunite and leave as non-state service providers. The state should retain the function of financing and quality control and transfer the provision of services to non-state providers. Then, politics and various circumstances made many changes to the agenda and timing of implementation, but the path in this direction remains. In particular, in 2023, we now understand the need to introduce non-state providers and the state to leave the function of control and routing. Shortly, part of our structure will already go under the Department of Health (this is such a "ministry of health" in Moscow). It will control routing and the register of all patients needing palliative care.
It is important to say now that the system's development is parallel to the development of the charitable sector. The "Vera" Foundation does not curtail its work but is stepping up. If a few years ago, the leadership of the "Vera" Foundation could say - that this is the only fund in the vast Russian Federation engaged in the development of palliative care, then now the Foundation has a program to support funds and non-profit organizations in the region. There are already more than 60 such organizations across the country.
Today, this is not competition; competition is still very far away - this is still market development, and it is finally understanding the problem by the regions. Regional funds are emerging and growing, and we know that more and more areas are moving from level 2 to level 3a - so far, only to the second step. At the same time, with the increasing volume of home care in Moscow, we want to switch to telemedicine services in 2024; that is, some consultations will be online. The first such consultations were introduced in practice by the children's hospice in Warsaw, and they have been actively using them in their activities since 2017. In 2025, Moscow should finish building its system infrastructure.
It makes sense to talk more about Russia's third stage of palliative care development. It includes many legislative changes, which slow the growth of palliative care in all the countries from where you are listening to us today. But before we start discussing this stage, a legislative base does not affect the quality of care. In many places, care was of high quality even before the appearance of regulatory legislation, and it remains high quality not everywhere but only where there are people who are interested and want to learn. Legislation provides an opportunity but, unfortunately, does not guarantee anything.
Anastasia Zhdanova: The third stage is a period when the most turbulent changes occurred in the Russian Federation; this is the peak of development, in which the efforts of both the state and NGOs, the business community, and the media were united. Such a union, as was in the past decade, when we, on the one hand, received support from the "Vera" Foundation; on the other hand, we were supported by the state at all levels, starting from the regional, where the Deputy Mayor of Moscow for social development Leonid Pechatnikov came forward with the Initiative of the transition of the head of the "Vera" Foundation Nyuta Federmesser to the management of the Palliative Care Centre - in fact, he proposed a transition to a new level of development of the sphere. "It's time not only to criticize but also to start doing it yourself" - with such a proposal, the state came out. This was a stage of uniting efforts when the state came to NGOs and said: "You know how to do better? Do it!" We also received support at the federal level - we had direct contacts with both the Ministry of Health and the Government of the Russian Federation, and even with the highest level of power in the country when we realized that we could move changes and improve legislation.
Nyuta Federmesser: we will tell you later how it happened. I cannot answer the question of why it happened, but I can answer the question of how we got there. Perhaps you know the book by Derrick Doyle, "How to Start", about palliative care. He describes the stages of development, and level 3a, where many of you are now, is inevitable and must involve four components. You can only move forward by uniting the state, NGOs, businesses, and society because the media creates the correct request for the quality of care.
Anastasia Zhdanova: when we were at the third stage of the development of palliative care, we faced the peculiarities of our country. On the one hand, we have typical problems that all countries face - we will come to them a little later. On the other hand, we needed to consider the Russian Federation's peculiarities.
Nyuta Federmesser: This was a challenging, the biggest challenge. This challenge led to the establishment of PACED; thanks to this challenge, we gained the right to appeal to representatives of other countries. We changed the definition of palliative care in the legislation, making it more reasonable and aligned with the WHO definition and global ideas. We convinced the state authorities that the law on analgesia needs to be changed, that hospice should be prescribed as a type of medical organization, and that there should be a position, and eventually, a speciality of a palliative care doctor. We explained that palliative care should be provided at home and in stationary organizations because the country is enormous.
But how do you implement federal legislation, written in the centre of multi-million Moscow, by people who have hardly been anywhere except Moscow, St. Petersburg, Europe, and the USA? How do we convey the problem of territorial availability and population density? Yes, there are eight adult hospices in Moscow, two children's, and nursing homes. But what about there in Yakutia? What about in Tyva? What about in Dagestan? What about in the Caucasus, where the mentality is entirely different and where, according to cultural traditions, help is always provided to elderly people at home? And there are many interesting features. For example, if in Moscow and large cities, we proved that relatives should be allowed 24/7 in our institution, there is no such problem in the Caucasus. Try not to let relatives in the Caucasus 24/7 into the ward of their seriously ill relative; they will demolish the hospital. There is another question: how many relatives are to be admitted simultaneously? One of the hospitals in Makhachkala (Dagestan) told us that they try not to let more than four people at the same time into the resuscitation of their seriously ill relative simply because it is difficult to work when there are more than four relatives there. This is how different territorial accessibility in the country is; this is how various economic and social development is. An outdoor toilet with no hot water is not only in the residential private sector; this is also included in the healthcare system. We have healthcare institutions heated with coal, which are snowed in winter and difficult to get to—severe cultural differences - both Muslim, Buddhist, and Christian, and any region you want. For example, in the Muslim areas, schools for carers and nurses exist at mosques. It turned out that spreading knowledge, information, and the culture of care and assistance is necessary, rather than through madrasahs such as non-secular medical schools. Such an approach will work faster than organizing assistance through state structures.
We have an excellent economist, Natalia Vasilyevna Zubarevich, who proposed the "Theory of Four Russias" many years ago. The four Russias are the first Russia, which includes millions of cities and the most economically developed territories close to the European level: Moscow, St. Petersburg, Yekaterinburg, Novosibirsk, and Samara. The second Russia is large and medium-sized cities with a clearly defined industrial profile, for example, Nizhny Novgorod and Kaluga. The third Russia is small cities, working settlements, and rural areas. Thus, this is a large part of Russia, the province and periphery regarding social and economic life quality.
Third, Russia has a predominantly elderly population, the youth living there, and a very high percentage of alcoholism and its particular specifics. The fourth Russia is national republics: Caucasus, South Siberia, Tuva, Altai. This is also a province and periphery, but specific, in which its features are related to religion and the process of urbanization. The transition of the population to cities is still going on, as well as with strong patriarchal norms. There is a request for end-of-life care in these regions, but it is an entirely different format. Striving in these regions for what happened in the post-war years in the UK, what we all strive for and try to match in palliative care, is entirely meaningless. There are also unique "pieces" in Armenia, Georgia, Kyrgyzstan, and Tajikistan. In these countries, there are territory segments to which one should approach with a completely different tape measure, with a completely different measurement.
In addition, there are factors expected to the world that reduce the availability of palliative care and do not allow us to reach levels 4a and 4b. The most basic is that in states, the national strategy does not include a plan for palliative care; it needs to be provided or carried out with a limited volume of trained doctors in palliative care. For example, in most European countries, the number of medical specialities is about 30, not positions, but specialities - not a position at work, but a speciality. The number of specialities is limited, and out of these 30, a specialist in palliative care, a palliative care doctor, is definitely included. A person learns this in postgraduate training.
In Russia, there are more than 90 medical specialities; among them, there is no doctor in palliative care, although we already have training courses. In this matter, the dynamics and development are fundamental. First, training courses should appear, then a position and only after that a speciality. Thus, a speciality can occur when the practice has already been worked out, and sufficient specialists exist.
Another important factor, which we are used to putting in the first place, but with the presence of a strategy, it would be solved by itself - these are regulatory restrictions on morphine and strong analgesics. The next factor is the availability of such drugs, even if they exist. Then, there is a lack of information among officials, medics, and patients. If you have no information, you do not know what to want. If people are used to suffering at the end of life, and they have the word "cancer" associated with the word "pain" and the word "death", and they do not know that it can be different, then they do not require, and the state power does not react. The state power is always rigid and responds to requests, and very rarely, or maybe never, shows Initiative in humane issues.
Another factor is cultural and social barriers, as well as the stigmatization of palliative care. We are fighting this in Russia, as many are still doing worldwide. Hospices are still associated not with life but with death, especially among people who have never encountered them. Those who have encountered them once already understand that a hospice is about life.
According to the World Health Organisation, these factors reduce the availability of palliative care. Palliative care receives only about 14% of patients in need worldwide, and these 14% are mostly concentrated in large cities.
Anastasia Zhdanova: During the third stage, the peak of development, we worked with all factors reducing the availability of palliative care in Russia. In this situation, we needed to unite all possible resources and political will, which was supposed to help us change the situation, ensure the availability of pain relief, ensure employee training, and create infrastructure. At this period, one of the most important tasks for us was to systematically formulate the sequence and content of actions for the authorities to ensure the availability of palliative care.
We saw that neither the national project "Healthcare" nor "Demographics" is a word about palliative care. This is unsurprising because the state is interested in birth rates, combating diseases that lead to premature death, and treating those diseases that bring taxpayers back to work. Palliative care is about something else; it does not have a direct and apparent economic effect on the state. We needed to interest the authorities in the development of palliative care. On the one hand, this was implemented through the media, through various vivid life stories that attracted society's attention and then the authorities. On the other hand, by explaining to the state the foundations of the economic efficiency of palliative care.
Nyuta Federmesser: This was a slightly different country, a slightly different government. We managed to get a priority project into the state strategy. Pay attention; this was almost seven years ago. We would like you to watch the video about this project. To get to this priority project, many things had to be done; we had to reach a certain level of interaction with the authorities. But the video allows you to move to a new level of interaction. You watch it, and then we will dissect it by slides as an instructive textbook.